Basically, you become a prisoner in your own body. The disease is called spinocerebellar ataxia 3 or Machado Joseph disease and right now, there is no cure. Though the picture is old, it's a good one because it depicts both my father and my sister still living, in their wheelchairs. My father was 69 when he died, but my sister was only 55. I'm sure a lot of individuals would say that that is a pretty full life. But what the disease does is from the time of diagnosis until death is it makes you suffer, everyday robbing you just a little more of your strength, and your dignity to persevere.
The remainder of my family(2 brothers and myself) have it as well. And, being genetic, all my brother's and sister's kids have a 50/50 chance of coming down with the disease. The money I am trying raise is an insignificant amount in what is truly needed for additional funding. All money raised in this project will go to the National Ataxia Foundation, ataxia.org. My goal in life is to bring about awareness of this little known disease and I truly hope and pray that you will help me reach my goal. Thank you and god bless!
- Heidi Mainwaring-Pickering
- Claudia Schwartz
- john manuel
- holly downey
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